I need help but I’m not helpless

February 13, 2017

Maybe it’s because I have a disability. Maybe it’s because I ask for help. Maybe it’s because I’m a woman. Maybe it’s all 3. Whatever the reason, it’s irritating.

It’s winter in Boston. Winter in Boston means snow on the ground. Not every day, but enough of the time.

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It’s beautiful. It’s picturesque. And it’s a pain in the ass.

I love the snow when I’m indoors, but then I need to go out. It’s slippery, and I’m terrified of falling and further hurting myself. I’m not steady on my feet, so a fall is more likely. I need help shoveling out my car due to my back and wrist pain. Suffice to say, it’s difficult.

Luckily, friends and strangers have been kind over the years, and in my new home, that hasn’t changed. Folks have helped me shovel out my car, and for that I’m grateful.

What I could do without is the “explaining.” Today a neighbor helped to shovel out my car while I cleared the top, which thankfully I’m still able to do. It was really sweet – we’d never even met before. I was really appreciating his efforts. Then he told me to “try moving back a bit, don’t gun it, if you get stuck you’ll want to…” and he proceeded to tell me how to back out of the parking space. I’d already told him I’d grown up here and lived most of my life here while we chatted about Boston winters. So why did he think I couldn’t back out of a parking space in the snow (if you’ve never done it, yes, it’s tricky. But once you’ve done it for 20+ years, you usually know what you’re doing.)

The other day it was someone else telling me how to back out of a space. A couple weeks ago, someone warned me as I got in my car that the roads would be getting slippery soon. What the $%#@?!? I learned to drive in this stuff back in the ’90s! I know how to tell when roads are getting slippery, for crying out loud.

I need help. That’s true. I won’t deny it for a second. But I’m not entirely helpless. There’s a lot I can do and there’s a lot that I know. Driving in the snow is one of those things. So I wish people would stop condescending to me.


Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.


When everything goes wrong

January 17, 2017

Lately I feel like I’ve been working all the time. But I don’t have a job. So what the hell is going on?

I had to sit down and think about it, but I think I’ve figured it out. It’s things like the last 24 hours:

  • I got my new laptop, opened it, started it, and found a problem. After an hour on the phone with tech support I was told the laptop needs to be replaced. But the office that handles that was closed for the holiday, so I had to call back today to arrange that. They put in the order and someone will be in touch with me within 48 hours. So I STILL don’t have a working laptop and I’m STILL spending hours doing things that should take minutes. Like the super-long message I was writing, that was almost done, and that was lost when my laptop crashed for the millionth time a few minutes ago.
  • My new apartment is still a mess. Since I can’t set up my laptop, I might as well put together some of the Ikea furniture. I opened the box last night, make sure I had all the pieces, and reviewed the instructions. Totally doable. Today while I was on hold for the SSA (I’ll get to that in a minute) I figured I might as well put it together. There were 8 steps. After 4 steps I was in pain and was going to take a break, but I was excited to be making progress. Everything else is a mess. I wanted to at least get one thing right! So I did step 5. And then steps 6 and 7. I did half of step 8 when the phone was answered. I spoke to the guy for a while, then returned to the furniture. I just had to put in 3 screws! Yay! Except the last 2 wouldn’t go in. I played around and found the problem: 2 of the holes weren’t drilled right. I can’t finish it. I need to exchange the piece. Ergh!
  • I had a simple question about my social security disability. I didn’t have the number for my new local office so I called the main number. I was on hold for 45 minutes, but at least I was able to almost put together some Ikea furniture in that time. Finally I spoke to someone who couldn’t answer my simple question. He gave me another number. They could definitely help. I was only on hold 5-10 minutes before I spoke to someone who gave me another number. This time I’d get answer. And I actually did. It took well over an hour, but I got an answer to my simple question. Why can’t the SSA’s folks at the main line answer such simple questions? Still, now I have to find a way to get the paperwork done without a reliable computer. Hmm.

No wonder I always feel so busy! I’m trying to move into a new apartment, but I can’t make progress on setting things up. I have digital files scattered everyplace. Things are a mess, and it makes my brain feel messy.

This isn’t so bad. I know it. These are pretty simple problems. A messy home is ok. A lack of computer for 6 weeks sucks, but isn’t the end of the world. Spending hours on the phone (if you include the computer stuff and SSA) to not have my problems fully resolved sucks, but it’s survivable. Still, when I add it all up, it’s no wonder I feel like I have a job, like I’m always working. If only I was getting paid for this “work”!

Now the key is to find ways to relax. To de-stress. Because stress is bad for chronic illness and I’ve been feeling it. I slept a lot last night. Too much. And I woke up tired. This is taking its toll, and I need to maintain my health. I intentionally blocked out 3 days this week as “me” days. Yesterday was the first. I didn’t get as much done as I would have liked (setting up the new laptop was on my list) but I made some progress. Today I made more (even though the furniture wasn’t fully built.) I just have to remember that it’s a process. And then I need to take time to relax.

Which means it’s now time for a hot shower, a long walk, and a good book. Then I’m off to my new mah jong group so I can use my brain in a better way.

What do you do when you feel overwhelmed and you need to relax? What are your favorite go-tos?


Please stop adding to my stress

January 7, 2017

Over the years I’ve learned to control my stress levels. In addition to the obvious emotional benefits, it does wonders for my physical health. Stress exacerbates everything, so I’m happy to avoid it. Lately, though, it just keeps piling on.

I moved to a new apartment 2 weeks ago. I absolutely love it here! The move was less stressful than I would have thought, and I unpacked very quickly. Unfortunately, while the boxes are gone, the place is a mess. There are papers in various places and clutter on the counter. To a stranger it doesn’t look like I just moved in (except for the empty walls) – it simply looks like I’m unorganized. And the clutter is getting to me. The mess makes my mind feel messy.

On top of the clutter, there are so many little things to do! I need to fill out forms for fuel assistance in my new town, get on local mailing lists and off of my old mailing lists, and a dozen other things. And of course, I need to decorate, which feels unnatural to me. It takes hours to research things I want and then, just when I make my decisions, I find out the thing is out of stock.

Those wouldn’t bother me at all, though, if it wasn’t for the rest. My laptop has been on the fritz for over a month! Even the repair guy has given up. It’s time for a new one, even though that machine was only two years old. So I need to research a new computer. I’m not sure what to get and I’m wracked with insecurity – what if I get another crappy machine, despite researching them thoroughly? And of course, that’s money I hadn’t planned to spend, too.

My Tivo is pretty new. I planned out that purchase last summer and it was a smart move. I have a cheap antenna that I bought online and now I can record all of my favorite shows on the channels I get over the airwaves – no monthly fees! But a few days ago the Tivo began to buzz. It’s a strange, annoying sound. The quiet of my new home is ruined by this constant buzzing. When nothing is set to record I unplug it, but that’s annoying and not something I want to do permanently. I need to figure out how to fix it, or else see if it can be replaced under the warranty.

It’s the end of the year, which means the federal government wants to know about my income for the last year, not just for taxes, but for my benefits. Oy! That would be easy if my laptop was working, but without it.

And because I moved, other benefits offices want information about my finances, too. How can I tell them about my utility bills when I haven’t received any yet? I just moved in!

I do little things to earn some money, but they all require the computer. Damn that laptop for breaking just as I was getting ready to move!

I was going to try online dating, actually, but I need a working laptop for that.

Because of the move I didn’t schedule any doctor appointments for the entire month of December. It was lovely. But now I’m making up for it. I had 2 yesterday (Friday.) I have another Monday. There are several more over the next few weeks, too. I need to start a medication on Monday that will make me feel like crap for about 2 weeks, but I already put it off longer than I should.

As I was telling someone today what I planned to buy for new furniture (cheap, but nice looking!) she tried to talk me out of it for no good reason. I almost lost my temper. I’m stressed out by trying to juggle way too many balls in the air. It’s just too much! I don’t need someone disagreeing with me over something so basic. Why mess up my plans? I know she didn’t mean any harm, but I just don’t have it in me to deal with anything new. I can’t handle more.

These thing are all so little, but they’re just too much. Just like 1 ball of yarn is light, but 50 weighs too much for me to carry. It too damn much.

And yet I’m super lucky. My awesome parents are buying a lot of my new apartment decorations. Several relatives gave me Amazon gift cards as housewarming gifts so I can buy more. I have enough savings to buy a laptop. I can afford all of this. I have the time available to work through it all. Ok, I don’t really have the energy for it, but I’m getting there. I’m so lucky.

But I’m still stressed.

And it’s affecting my health.

How do you handle it when you have too many balls in the air? How do you relax when 50 different things are calling for your attention? Please comment below and let’s share some ideas!


Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


Trying to do it “all” with chronic illnesses

December 14, 2016

It feels like everything is hard with a chronic illness. Pain, fatigue, and other symptoms affect us in ways most people don’t think about.

Walking is harder. Sitting is harder. Reading is harder. Cooking is harder. Planning is a hell of a lot harder.

Last year I wrote down goals for earning money in 2016. I didn’t succeed, but they put me on a better path than I would have otherwise been on. So I did it again for 2017. And then I did something else: I wrote down my personal goals. I’ve never done that before and it was fascinating.

I wrote down everything big. And I realized how much harder it will all be than I would have thought just a few years ago.

I wrote down the book I want to write, blogging here, improving my health including doing regular physical therapy and other exercise, getting a dog (yay!), joining a dating site (well, maybe), making new single friends (most of my friends are coupled off at this point) through attending meetup groups, and some other things I’ll be telling you about soon.

It was a really great exercise and I recommend everyone do it. It puts everything into perspective. Doing this forced me to seriously consider everything I want to do, then narrow that down to what I want most. Then I broke that down into what I need to do to make it happen. For example, in order to make new friends, I need to join some meetup groups and actually attend, instead of my usual thing of joining but then staying home. (If you don’t know about meetup.com and you want to get out of the house more, check it out! I can’t do the physical activity groups like hiking or playing frisbee anymore, so I’m joining knitting and board game groups.) And I wrote down how many times a day I’ll do physical therapy, how many times a week I’ll check in on dating sites, and so on.

And then I looked at my list, added up the time required for each thing, and thought, “No wonder I’m so overwhelmed and never feel like I have enough time to get things done!” It was great! I mean, it sucked, because I have to give up something that’s important to me. But at least now I understand that it wasn’t that I was unorganized, just that I was trying to do more than my health allows. I have fewer hours, and I need to accept that. Sure, I’ve got a lot less on my list than I would if I was healthy, but it’s still too much. I can’t go right from a date to taking a walk – I need to rest in between. I can’t make new friends unless I have the energy to go out with them, and that takes energy from other activities. I still want to hang out with my current friends, knit, read, and do other things. Plus, showering, getting dressed, laundry, washing dishes, and even eating take up a lot of energy. But I don’t have to tell you that.

And of course, I can’t assume that any of my plans will stick. I could plan to do 3 hours of stuff every Monday, and some Mondays I’ll be able to do more but others I’ll have to less or maybe nothing at all. It’s completely unpredictable.

So that’s how I find myself looking at my list of personal goals for 2017, feeling keenly aware of the ways that everything is just a bit harder with chronic illnesses.

I don’t have the answers yet, but at least I can see the problem clearly. Something’s gotta give. Ok. I accept that. Now I just need to find the answers.

What about you? Do you set personal goals? How do you find ways to fit everything in or pare down?


Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.


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